This FAQ, provided by NHGRI, offers further information on the NHGRI implementation of the NIH Genomic Data Sharing Policy.
This NIH Guide Notice, announced on 12/2019, is in effect for applications submitted on or after 1/25/2021 and applies to new research projects deriving genomic data from human sources, such as specimens and cell lines.
The Global Alliance for Genomics and Health (GA4GH) is an international, non-profit alliance of 600+ organizations working to create frameworks and standards to enable the responsible, voluntary, and secure sharing of genomic and health-related data. Find genomic data, regulatory and ethics, and data security toolkits on the GA4GH website.
The Genomic Data Toolkit produced by the Global Alliance for Genomics and Health (GA4GH) includes resources to support genomic data sharing such as machine readable consent guidance, a catalogue of available tools for documenting family health history information, a data use ontology, standards for building data repositories, and downloadable APIs.
The Regulatory & Ethics Toolkit produced by the Global Alliance for Genomics and Health (GA4GH) contains ready-to-use regulatory and ethics guidance for genomic and health-related data sharing including consent, data privacy and security, and copyright policies.
The Data Security Toolkit produced by the Global Alliance for Genomics and Health (GA4GH) offers ready-to-use data security guidelines for genomic data sharing.